I’m in the shower, about to rinse the dye from my hair, when out of nowhere a beautiful, fully-formed sentence pops into my brain. These words would be the perfect beginning to the article I am writing, only, I’ve no pen and paper lying around in my bathroom. I panic. I am focusing with all my might to preserve the meaning in my memory, but I had forgotten to leave bath towels next to the shower. Will I risk leaving a trail of watery hair dye through the house as I search for a notebook? Meanwhile, flashlights go off in my brain and thoughts flood my stream of consciousness.
Why is my memory the size of an ant’s?
I bet this never happens to J.K. Rowling!
How will I ever finish that book if I keep ending up in situations like this?
It’s Murphy’s Law of course…
Why, why, why?
By now I have broken out in a sweat and when I’m finally done running around to collect towels and a pen and paper, the concept is gone from my mind and what is left is gobbledygook.
Thanks multiple sclerosis. I can always count on you to strike just when I need my… what’s it called again? Ah, yes… memory.
But everyone forgets, don’t they?
I know what you’re thinking – the abovementioned might have happened to anyone. Yes indeed, loads of people experience the odd bout of forgetfulness, whether or not they have a neurological illness. Sadly though, 45 – 50% of people with MS struggle with cognitive changes that are connected to the disease. These cognitive difficulties can include but are not limited to problems with learning and concentration, problem solving, word finding and information processing and recall. Sometimes, the onset may be subtle enough to cast doubt on whether or not it’s related to MS or whether it’s just everyday forgetfulness.
As with most illnesses, early diagnosis of issues you’re experiencing will help you to accept your new reality and learn how to manage your symptoms. If you suspect you are having cognitive issues, your primary care physician or neurologist will be able to give you targeted information on how to tackle your problem. A neuropsychologist can do cognitive tests and/or an MRI scan to see if your illness is manifesting in this way.
My personal tipping point
I decided to go back to my neurologist when I forgot my brother’s wedding.
Not remembering something of such magnitude showed me what loved ones have been hinting at for a while. Friends and family started noticing that quite often, I was unable to remember the names of people I had known for many years. They also saw a decline in my word-finding and concentration abilities as I would often lose the thread of a conversation, and on occasion, my mouth would say things my brain didn't approve of, or my brain would want to say words my mouth wouldn’t make.
In short: I had become a champion of the blank-stares competition, and to this very day, I continue to add medals to my showcase.
At first I feared people's reaction to my symptoms, and at times, I still do. Life with an invisible illness is not an easy one at the best of times and adding cognitive difficulties to the list of physical symptoms brings an extra layer of scrutiny I can frankly, do without. If you are going through the same thing, just remember: you are not going mad. And don’t let anyone take advantage of you when they realise you cannot pinpoint exact dates, times or events.
Navigating the new normal
However, it is not all doom and gloom. Neuroscience is advancing at a faster pace than ever before, and research in cognition tells us that keeping our brain active might have a positive impact on our memory and thinking in the long run. There is a plethora of ways you can manage your symptoms when you begin to feel cognitive issues interfere with your life. My first remedy was cheap and colourful: sticky labels all over the house and at work. Now you can use modern technology as a backup memory stick as it were, there for when you need it most.
I use several life hacks – naturally, when I remember to use them! – to get through the day avoiding the aforementioned shower vs. memory battles.
1) Online resources
I often put my phone in a freezer bag and take it into the bathroom with me when I shower. This way I can make notes of things I need to remember and look up information when needed.
I also rely heavily on my Google calendar that syncs automatically when I use my laptop to keep all my appointments in check.
2) Offline resources
As mentioned, I love using sticky notes. I also use large wall calendars and hang them in strategic places. My house is littered with fancy notebooks in case I need to write something down as I rely heavily on lists and journaling, and I love doing crosswords and board games to ‘train’ my brain.
3) Healthy habits
The MS Trust also suggests eating healthily, avoiding alcohol, stopping smoking and exercising regularly.
Momentum Magazine reports that you can build new neural pathways by learning new motor tasks such as a dance steps, learning to play an instrument, taking up a new hobby or learning a new language.
NPS-IE-NP-00116 November 2020